Bradford couple's heartbreak as son, 6, is struck by rare eye condition (From Bradford Telegraph and Argus)
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Bradford couple's heartbreak as son, 6, is struck by rare eye condition
6:00am Wednesday 11th December 2013 in News
A heartbroken Bradford couple want to raise awareness of a rare condition that has blinded their son – and will probably kill him by the time he is 18.
Haris Azam, six, of Steadman Terrace, has Juvenile Batten disease, an inherited disorder that primarily affects the nervous system. The youngster was diagnosed in September, to the horror of his parents Sikander Azam and Summaira Shah, who were told about his limited life-expectancy.
Mrs Shah said: “I was just thinking about that I was going to raise him for 16, 17 or 18 years, and just lose him like that. I know it could come any time in life, with an accident or something like that. But knowing someone is going to die, especially your own child – it is awful.”
After a few years of normal development, children with Juvenile Batten disease develop progressive vision loss, intellectual and motor disability, speech difficulties, and seizures.
Vision impairment is often the first noticeable sign of the disease, beginning between the ages of four and eight years, and tends to progress rapidly, eventually resulting in blindness.
Mrs Shah said: “When he was four everything was fine, he had no problems with his sight. But suddenly he started banging into things and walking into walls.”
Haris was taken to the opticians, who then referred the family to hospital after not being able to find out what was wrong. After visits to hospitals in Newcastle and Leeds, Haris was diagnosed with Rod-Cone Dystrophy, the name given to a wide range of eye conditions. By this point Haris, who attends Grove House Primary School had about 20 per cent vision.
But Sikander wasn’t convinced. They took Haris to Vancouver, Canada, where he saw an acupuncture specialist who got his vision back up to about 80 per cent. But within three months of returning from Canada, Haris’s vision was back at 20 per cent.
The family’s next step saw them take Haris to an eye hospital in London, where specialists said that not only would the youngster never regain his eyesight, but that he also had Juvenile Batten disease.
Mrs Shah said: “It starts from the eyes and the child slowly deteriorates. His speech is affected. He has gone back to babyish behaviour. Right now he doesn’t have his eyesight – he just uses the corner of his eye. But he has never ever said to me ‘why can’t I see’. He thinks everyone is like that.”
The couple also issued a plea to medical professionals to do everything they could to try and find a cure for the condition. “We want to raise awareness of this condition,” said Mrs Shah. “To get someone to start working on this disease. Only 140 or 150 children in the UK have it – it is very rare.”
She added: “There are other parents like us whose kids’ eyesight is going but they don’t know why."
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